Don’t give up. There can be hope in the midst of chronic pain. Create a new chronic pain perspective.

Month: July 2018

There will be an Opioid Symposium on Monday night hosted by my Congressman. I just found out about it, and I’m scrambling to get facts and figures together so I have proof of the information I will be sharing with them if given the opportunity.

To begin to prepare, I called Congressman Rouzer’s office to find out how the chronic pain community will be represented in this setting and what they hope to accomplish.

I spoke with someone that explained that the symposium would have four panels as it relates to opioid stigma, treatment and resources, prevention and law enforcement. Each group represented will have 2-panel experts that will talk for 30 minutes each.

She said one panelist would be a doctor from our hospital, and he “knows chronic pain.”

I respectfully disagreed with her. Unless the doctor is a chronic pain warrior, he can shed no light on the physical and emotional life transitions that being in pain 24/7 brings.

Knowledge of the disease does not portray us. Having pain now and then does not describe us. He cannot begin to understand the suffering of chronic pain with chronic illnesses unless he has lived with it. He cannot represent us on this subject.

She explained to me that it is a complicated discussion and “unfortunately, everything could not be heard in the 2 hours allotted to the discussion,” and that is why no one that has pain is sharing our chronic pain perspective for us. That is unacceptable that we are not part of the equation of the future of opioids, and I intend to change that in the future symposiums.

She became silent when I asked her if Congressman’s Rouzer knew that people are losing the will to live and some lose the chronic pain battle to suicide because the suffering is too high because of the recent changes with opioids.

Her ultimate response was that I needed to have a meeting with his office. They want to hear my perspective which is a beginning.

What are your thoughts as a person of pain about the lack of representation at this event for people with chronic pain?

If you have been negatively affected by this lack of proper treatment or you know of someone that committed suicide because of the untreated physical pain they are in, please send me the information by my Contact Form so I can share with the people that will be shaping the chronic pain communities’ future. Alternatively, email to validatingchronicpain@gmail.com

It does not matter if you live in my district or even in the United States. I want to hear your stories so that I can take this information as far as possible. I will keep it anonymous if requested.

Much Love and Many Prayers
Cindy

If you are struggling with living each day with chronic pain, if you wake up and you think to yourself, you cannot do it again…You can. Just keep going.

Text HOME to 741741 from anywhere in the USA, anytime, about any type of crisis.

I started writing an ethical will for my three sons a couple of years ago.

I’ve never finished it because I have so much I want to tell them. I just don’t know where to stop.

An ethical will is a way to tell your loved ones your values, blessings, life lessons, hopes, and dreams for the future. It’s simple really.

It can actually be about anything you feel is valuable information to pass down to the next generation, and you do not have to wait to die to pass it on to your family members.

You can give them a copy at any time for any reason, or no reason at all.

It is not a legal document of any kind. It’s just thoughts and things you want to share.

Don’t we all have times when we wish we had one more moment in time to tell that special person something that we value deeply?

Here is just a tiny sampling of things I have written in my ethical will of words of wisdom I want to pass on to my children.

Life is hard no matter what path you go down.

The people beside you are hurting in some way just like you.

That’s just reality.

EVERYTHING depends on how YOU react to it.

You can try to find positive instead of looking for the negative.

It’s harder work, but it pays off with dividends: Joy.

I guarantee you’ll have joy if you learn to ride the wave instead of drowning in the wave.

Much Love and Many Prayers,

Cindy

JULY Chronic Pain Support Group Update:

I am waiting on the final go ahead from the community agency that is allowing me to lead a chronic pain support group at their facility locally.

I will now be making the flyers and cards to give out at doctor’s offices locally and to put up around town.

The dream is slowly coming together. I want to thank everyone that is supporting and encouraging me; specifically, my hubby. This is probably one of the craziest ideas I’ve ever thrown at him but he has never lost a step right beside me. Always & Forever.

Help My Mission of helping others live the best life they can with chronic pain.

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Photo Credit (I could not bring myself to crop the photo – the colors were too awesome- so it is too large but beautiful) by Paul Larkin on Unsplash

I would like to thank Wendi over at SimplyChronicallyIll for nominating me for the Sunshine Blogger Award. Wendi shares her story of living simply with multiple chronic illness. Her words are honest, and I think you will be blessed by her thoughts so go check her out.

HERE’S HOW IT WORKS…

THE RULES

1.) Thank the blogger(s) who nominated you and link back to their blog

2.) Answer the 11 questions the blogger asked you

3.) Nominate 11 new blogs to receive this award, and write them 11 new questions

What is your favorite thing about blogging awards? I love reading the answers and getting to know other people around the world. The questions take us a little deeper into each other’s lives allowing us to see that we have many things in common. Having this community to interact with about our chronic pain/illness helps removes the feelings of isolation.

If you were a sports car, which one would you want to be and why? It would have to be a Ford Mustang. The family business was an auto repair shop. My two older brothers had hot rods, and I was raised by them to love Fords. I was more of a tomboy than a girlie-girl, and I remember it as a time to spend time with my brother. I usually annoyed him to death but, secretly, I think he liked it that I was interested.

If you could only eat one color of food for a week, what color would it be? My first thought is green. There is so many good for you foods that are green: Brussel sprouts, broccoli, butter beans (I’m a southern girl), asparagus, peas, and more than I cannot think of right now.

What is your favorite movie line and why? From Hope Floats: “Childhood is what you spend the rest of your life trying to overcome. That’s what momma always says. She says that beginnings are scary, endings are usually sad, but it’s the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up. And it will, too…” I saw this movie for the first time during a new beginning in my life and the movie just resonated with me. This line always stuck with me. It is one of my favorite movies.

If you had to leave your house and take only 10 things with you (excluding all living beings) what would they be? Cell phone to call people, pen and paper to write with, a box books to read, computer to keep up with the world, my favorite sweater that is a deep wine/cherry (somehow it goes with everything), my medicines, my cane. headphones (cannot live without music), my datebook (otherwise I won’t have a clue what I am supposed to be doing), and sun glasses to shade my eyes because I have sensitive eyes and have migraines easily.

Describe yourself in two words. God’s Beloved.

What is one sporting activity that you enjoy watching? Most anything racing or motorcross related. I grew up with brothers and they were big into fast cars. Now hubby and I are in to motorcross. He rides, I watch or video whenever I am physically able to do it.

If you could give one piece of advice for all the world to hear what would it be? Do not be afraid to be vulnerable. There are so many misunderstandings because people do not say what they really feel. Insecurities hold people back from allowing others to truly know them. Since everyone has had varied life experience, we have a completely unique perception of the world than the next person. Hoping that the other person will figure out what you are thinking is setting yourself up for communication failure.

If you had to learn a made up language, which one would you choose and why? Pig Latin because it sounds cool.

If you were to learn to play an instrument which one would you choose?A very long time ago, I played clarinet and the piano. If I had my piano, I would still play it. If I had time, I’d love to be able to play the guitar.

My Questions:

When was the last time you changed your opinion/belief about something major?

If you could make one rule that everyone had to follow, what rule would you make?

What is one of your favorite smells?

What song or artist do you like but rarely admit to liking?

What risks are worth taking?

What small gesture from a stranger made a big impact on you?

What makes a good life?

What’s the title of the current chapter of your life?

If you could make a 20 second phone call to yourself at any point in your life present or future, when would you call and what would you say?

What are some of your personal “rules” that you never break?

If you could have a never-ending candle that smelled like anything you wanted, what fragrance would you want it to be?

Through tears after dinner last night, I told my hubby that I finished everything on my to-do list. I was so happy that I had finally done that one more time.

It had been years since I crossed off everything on my daily list of things to get done. Chronic pain had changed every aspect of my life.

Once upon a time, completing daily tasks was something I was proud of doing every day. They were always long lists, and I believed that meant I was having a successful day, that I was a successful person who was not lazy or unorganized.

Whether it was at work or home, it suggested the day had gone smoothly, and I could be proud. The checked boxes indicated I had been prepared for every snag or dealt with them efficiently.

But tonight, I am in severe pain. I was so excited that I placed an “X” in every box, but I was crying because of the physical pain I was enduring from being so “successful.”

Then I realized what I was doing to myself. I was judging myself by the number of checked off boxes on my notepad.

I have worked very hard to change my perspective about living with chronic pain and to live as positively as I can regardless of my situation. I have been diligent in finding what isn’t working and changing it, but this one snuck in on me.

Why do we push ourselves so hard mentally or physically past the breaking point when while living with chronic pain?

So many dreams die one by one when you are diagnosed with a chronic illness. Yesterday was almost as if I was trying to prove to myself I could still do it. Well, I did do it, and it isn’t pretty. I don’t think it was worth it.

Don’t do this to yourself either. You only have one body. That family member that thinks you are lazy or the friend that just thinks you are unorganized isn’t going to donate you their body when yours gives out because you were judging yourself by what they thought of you.

I need to stop comparing myself to others and realize this is my life, not theirs and I’m the only one that needs to be happy about it. I need to decide on new ways to consider myself successful, and I need to nurture those ideas.

Today, I have put aside “the to do list.” I’m going to rest and recharge my batteries. Hopefully, I can start again tomorrow.

Update on the new chronic pain support group I am starting: I have spoken to a local mental health agency in my county about using their space for our meetings. They seem to be very interested in the idea of a place they can send their patients who are seeing them for depression and anxiety from either chronic illness or chronic pain. I think they were just as excited as I am. I am hoping this community agency will be a perfect match for our support group. Keep your fingers crossed.